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Monday, November 11, 2013

Getting Better and CFF Videos

Hi everyone! Stopping by to give an update on Mr. Charlie. He has been going to the bathroom constantly the last few days, which isn't very fun for him...however it's a great sign that we're flushing that mucus plus out of his system! So yay! He still has been coughing but he's only been on this new antibiotic for a couple days so we will see. So far we have a 3 year record of no hospital admissions so I'd prefer to keep that streak going! Especially since we have a vacation to Florida the week of Thanksgiving, which includes a trip to Sea World :) I'm getting nervous about the plane because I know he's going to get sick....last trip we took was to WA when he was 18 months old, my grandfather was kind enough to pay for first class tickets and we were really careful about germs and he still got sick after arriving in WA. And it is NO fun doing quadruple breathing treatments on vacation. So I'll try and get him to wear a mask, use lots of Purell and cross my fingers. But anyways, I'm getting ahead of myself! Hopefully his cough will go away with this new antibiotic, and hopefully he won't get sick on the plane. There...that's more positive :)

Charlie and Daddy at the park last week, aren't the two of them so handsome? :)

I also wanted to share the link to these video's of Charlie back when he was 6 months old. I might have posted these already but I can't remember if it was on Facebook or the blog, so sorry if this is a re-post! They are videos about Infant Care in children with Cystic Fibrosis and Charlie was the "demonstration baby" (for lack of a better term?) for feeding babies enzymes and physiotherapy (or PT). Charlie was such a bald cutie with that big round face of his :) All the people in the video are Charlie's doctors, nurses, etc-- except the nutritionist has since left the position. These videos are up on the CFF.org website and are also given out as DVDs to newly diagnosed parents around the country, which I think would have been really helpful had it been available at the time. There is a LOT to learn when your kid is first diagnosed and you need to start medications etc immediately, so I think the video's are probably really helpful if someone is feeling overwhelmed and confused since they can refer back to them over and over. Anyways, check em out, Charlie is in the "Nutrition and Enzyme" video and the "CF Airway Clearance" video, but they're all interesting so I say watch them all!

Funny SN about PT: we have been using the Vest for over a year now but when Charlie coughs my husband and I always do a few hard physiotherapy thumps on his chest to help loosen anything up. A few nights ago as I was reading him a bedtime story he coughed so I started pounding on his back for a while and he says "What are you doing?" and I told him "Trying to help you cough" and he goes "No no, you're doing PT!". Haha! I was shocked he remembered the name for it since it's been so long and even when we did perform manual PT he never said anything about it. Just thought that was cute! He's starting to understand his CF more lately which has been nice. He asks for his enzymes before he starts eating and he's really pretty good about doing his treatments and holding his nebulizer up, even if getting him to sit down is sometimes a challenge ("No... no treatment mommy. No thanks. Not right now, I'm busy" lol). I found a few books on Amazon about CF for preschoolers and thought I would buy those and start reading them to him.

ANNNNNYways. I have quite a few scrappy type projects coming up in the near future and some layouts to share, but it will have to wait for another day! Happy Monday friends!

Hi my name is Cassandra. I live in CT with my 6 year old son, Charlie, who has Cystic Fibrosis. I work in the biotech industry during the day but at home I love to cook, bake, and create scrapbooking layouts, cards, wreaths, and other crafty things.